Thursday, March 4, 2010

Luke's Second Heart Surgery

Monday I was preparing myself to say goodbye to my little boy. We actually went to the hotel the night before his surgery to try and rest a little. I was thinking that best case scenario, post-op David and I would be keeping vigil by Luke’s bed, taking shifts to make sure that Luke was never alone. I wouldn’t ever be able to forgive myself if he died alone. So we attempted to get some rest before the hell began again. I don’t think either of us slept more than a couple of hours. My alarm was set for 5:30 so we could get to the hospital and hold him by 6:00. David kissed me at 5:00 and said “let’s go see our boy.” So we did.

I didn’t start believing that Luke would really have his surgery until we were walking down to the OR with the anesthesiologist. When I got to Luke’s room after church on Sunday, I discovered that Luke’s heart rate had been in the 140s since about 9:00 that morning. 140s isn’t truly alarming. It isn’t too far off his normal rate. Usually his heart rate is in the 120s-130s when he’s awake, 140s when he’s playing, 150s when he’s upset. It was the fact that it had been 140s all day that concerned me. When the doctor came by I mentioned it to him, and he said that he had lowered one of Luke’s vent settings (called PEEP) about the same time as his heart rate started trending upwards. They increased his PEEP back to where it was, but over the course of the afternoon, it didn’t help. Luke’s heart rate topped out at the lower 160s, even while sleeping. For the past several infections that Luke has had, our first tip off was an increased heart rate. The doctor agreed to check Luke’s CRP (measure of infection and stress in the body) and white blood cell count. The results showed that Luke’s white count had increased slightly, but his CRP had actually gone down from the last test a few days before. Since Luke had no fever or other signs of infection, the doctor told me that we would plan to do surgery in the morning, as long as Luke didn’t spike a fever during the night. I went to dinner with my parents while David’s mom stayed with Luke. When I returned Luke’s heart rate was 130s. I was so relieved that I cried. As much as I dreaded surgery in the morning, I knew that Luke needed it to ultimately get well. I didn’t want to drag this out any longer than we had to. Another infection would set us back weeks.

When we got to the hospital the morning of surgery, Luke’s heart rate had been in the 140s through most of the night. A repeat test showed that Luke’s CRP had also increased somewhat. Our nurse hadn’t heard that they would delay surgery, so that was still the plan. The anesthesiologist came about 7:30. He told us about the lines he would put in Luke and how he would make sure that Luke was asleep and comfortable. We signed consent as they got Luke ready to go. We walked down to the OR floor with Luke. We gave him one last kiss (or three). “No funny business,” I told him (which is what I tell him every time I leave him for the night). “No elevator funny business,” I added. (Some of you might not know what all the comments about the elevator mean. After Luke’s first heart surgery, we thought everything was under control. Luke had been on his way up to his new room when his heart arrested in the elevator. That was the beginning of terrible, terrible problems for Luke including ECMO which led to kidney failure, bowl failure, seizures, and arrhythmia. We are still dealing with some of the results of that event.) So I kissed Luke one last time, and David said it was time to go.

As I walked away from him, it crashed over me that that may have been the last time I saw my baby alive. But what else could I do but let them take him to surgery? David and I held each other and cried for a few moments, then composed ourselves and went out to meet our families waiting for us in the waiting room.

All morning I felt numb and detached. Kathy, Dr. Mendeloff’s nurse practitioner came out about 10:30. She told us that during the heart conference that they have every Monday morning, she and Dr. Mendeloff had been notified about Luke’s CRP level. They had conferred with other professionals and decided to go ahead with the surgery, but that meant that they were delayed in starting. Every hour to hour and a half, Kathy came out to give us an update on how Luke was progressing with surgery. Each time she came into the waiting room with a smile on her face and good news. As the afternoon progressed, our visitors’ banter got lighter and lighter. Everybody grew more and more relaxed. David and I were still so guarded. Yes, we were glad that things had gone well so far, but we still had that “elevator” looming ahead. Kathy estimated Luke being finished with surgery at 1:00, and then later amended the time to 3:00.

About 2:30 Dr. Mendeloff and Kathy came out to tell us he was finished and explain exactly what had been done during surgery. Before surgery, blood traveled through Luke’s heart and lungs in a very different (and less efficient) way than other people. For review, in normal bodies, blue (unoxygenated) blood flows from the upper half of the body into the Superior Vena Cava and from the lower half of the body into the Inferior Vena Cava. Blood then flows into the Right Atrium then to the Right Ventricle. The Pulmonary Arteries then carry blood to the lungs to get oxygenated. Red blood then flows from the lungs through the Pulmonary Veins to the Left Atrium, then the Left Ventricle, then out to the body via the Aorta (see Wikipedia's article on the Circulatory System for a more thorough explanation). In Luke’s heart, the Tricuspid Valve that pumps blood from the RA to the RV was dysfunctional, so very little blood could get oxygenated. In the first surgery, Dr. Mendeloff placed a shunt (BT shunt) connecting Luke’s Pulmonary Arteries to his Aorta and made the small hole between Luke’s Atria bigger. This allowed blue and red blood to mix and allow more of the blue blood to travel to the lungs to get oxygenated. During this surgery, Dr. Mendeloff “patched” Luke’s Pulmonary Arteries (using donated non-living human tissue) to allow increased blood flow through them because they were about 50% of the size of a normal baby Luke’s age. He did away with the BT shunt and performed a “bi-pass” surgery in which he disconnected Luke’s Superior Vena Cava from his RA and reconnected it to his Pulmonary Arteries. Blood from the SVC no longer enters the Right side of Luke’s heart. Instead it flows directly to the lungs to get oxygenated. This causes the functioning Left side of his heart to do much less work. This is called a Bi-Directional Glenn procedure and is the first stage of the Fontan Procedure. Dr. Mendeloff explained that at that time his o2 saturations were about the same as they were before the surgery, although he expects them to drift upwards as Luke recovers and his body becomes accustomed to working in this different way. He explained that Luke had had a little trouble with heart rhythm when first going on the heart/lung bi-pass machine, but had no trouble during the surgery or getting back off the machine. He also had not shown any signs of “twitchiness” that would indicate that an infection was brewing. All fantastic news.

It would still be about an hour and a half before Luke would be settled in his new room and we could go in and see him. Everybody was looking relieved and congratulating us cheerfully. People started dispersing. I was pleased that surgery had gone well, but hadn’t we made it this far the first time? That elevator was getting bigger and bigger in my mind all the time. I didn’t feel like talking with or touching anybody but David. I didn’t want to smile. To those of you who came to wait with us, I’m sorry if I was distant or seemed less than grateful that you were there. I do appreciate it. I was just having trouble believing that Luke would be okay. I was preparing myself to say goodbye to my son, and if not that, for another long and terrible journey to recovery.

David and I went upstairs to the PICU waiting room to wait for Ellie (the nurse we’ve had the most since Luke was born) to come take us back to see Luke. I was prepared to wait a lot longer than we actually had to. Alone with David I finally allowed myself to cry a little bit more. Around 4:15, one of the nurses came out and took us back to Luke’s room. We had to hurry because they were planning to take the baby girl next door off of ECMO, and we wouldn’t be allowed in the unit while that happened.

Let me describe to you the difference in seeing Luke for the first time after his first and second surgeries. The first thing I noticed after #1 was the big ECMO machine that Luke had to be put back on after his arrest in the elevator. It’s a huge machine, and its absence after #2 was striking. After #1 Luke was hooked up to over 20 IV pumps, pumping an equal number of medications into his body. The IV poles were nearly toppling under the weight of all the pumps and more pumps were scattered at different corners of his bed. The number of IV pumps after #2? Less than 10, and some of them weren’t even turned on. You can see these things as you’re walking into the room. Get past all that, and you can finally see Luke. What a difference! I wrote this on the blog after Luke’s first heart surgery:

“When I looked at my son, he looked dead. I would have thought he was if I couldn't hear his heart beat on the monitor. He was so pale and still. His body looked like he had been through a war. Like he had been chewed up and spit back out. He looked like a little doll chewed up by a dog and then sewn, taped, wired, and jerry rigged back together. I was in shock. I couldn't speak, all I could do was cry. It didn't even look like my little Lucas.”

The night before surgery, I had terrible dreams about how Luke would look when we finally got back to see him post-op. I was terrified of walking in to see the ragdoll they had made of my son. I looked at him yesterday and felt more relieved than I can describe. He was pink. Not pale, not blue (cyanotic). PINK. Like a regular baby. I reached for his little hand and it was so warm. I also noticed the way he smelled. When he came back from #1, all I could smell was plastic and rubber and disinfectant. This time I smelled my sweet baby. After #1 Luke’s chest was still open to allow his heart to swell. After #2 he had a neat incision in the same place covered by a long strip of gauze. He was sleeping, but he didn’t look dead.

Luke came out of the OR attached to lots of plastic. Luke’s PIC line is still under his left arm. The anesthesiologist placed an arterial line in his right femoral artery (groin area) and a Right Atrial line coming out of his chest. He has two sets of wires coming out of his chest that can be connected to a temporary pace maker. He also came out of the OR with a line that measured the blood pressure flowing in his Pulmonary Arteries. That came out the afternoon after surgery because his pressures were rocking along at a level comparable to a baby with normal sized PAs. He also has two chest drainage tubes coming out of his chest to keep his chest cavity from filling with blood and fluid. He came out with a Foley catheter to carry away urine for him, but that came out not long after surgery because he has been peeing a sufficient amount. He’s got two big stickers (called NIRS) sensors on his forehead, one on his side, and one on his back to measure the amount of oxygen getting to his brain and other vital organs. Three smaller stickers, or leads, measure his heart rate and respiration rate. And of course he’s attached to the ventilator via his trach, and his pulse oximeter, which measures the amount of oxygen in his blood at his extremities, is attached to his toe. They resumed feeds starting at 2 mLs an hour via his g-button and that will gradually increase over the next few days as he tolerates it.

Last night we talked with Dr. Mendeloff for a long time. He clarified some of the details of the surgery for us, and we talked briefly about his next surgery which will take place when Luke is three or four years old. Dr. Mendeloff also told us we wouldn’t be banished to the regular children’s hospital floor, but we would be able to stay in PICU as long as Luke needs to remain in the hospital. I was able to give him a big hug to thank him for all he’s done for our family.

Yesterday, David and I felt good enough about Luke’s progress to allow ourselves to go back to the hotel and take a nap. Now, almost 48 hours after Luke’s surgery, we’re finally beginning to relax instead of waiting for “the other shoe to drop.” We’re finally beginning to accept that surgery doesn’t have to be the terrible experience that it was the first time. I’m still having a hard time believing that it went as smoothly as it did. No heart rhythm issues. No shocking. No ECMO or resulting kidney failure, bowl failure, or seizures. No infection. Did I mention no heart rhythm issues? I was sure after Luke’s last heart cath that at the very least, we’d have to deal with an arrhythmia.

So where are we headed? As of now, Luke’s vent settings are quite minimal. He is no longer receiving a set amount of breaths from the vent, but is initiating all of his breaths. The vent gives a certain amount of pressure support for the breaths that he takes (called Pressure Support mode or CPAP). His PEEP is the lowest it’s ever been at 4. The vent is delivering 30% oxygen (room air is only 21%), so he isn’t needing much more oxygen than you or I. Either later today or tomorrow, they may try him off the vent with just a trach collar that delivers the extra oxygen he needs and moisture to his airway. It may be possible to leave the hospital after this stay without any vent support (even at night), but we’ll see. They will take out Luke’s RA line later this afternoon, and if that goes well, both of his chest drainage tubes. Less plastic means less of a chance for infection, so every piece of plastic that gets removed is a celebration. Barring complications, Luke should need to recover between 1 and 2 weeks, and then we’ll be going home.

One terrible thing happened during surgery day that I want to reflect on. I mentioned the baby girl next door that they had to take off of ECMO Monday. While we were rejoicing that Luke came back from surgery safely, another family got the worst possible news. The doctors were forced to take that baby girl off of ECMO, but her little body couldn’t survive it. We didn’t know the family, but we’re terribly shaken at her death because that so easily could have been our family in her place. So many times we came so close to Luke slipping away from us. I struggle with the question of why I should get to keep my baby when the baby next door had to pass away. Please pray for that family in their time of grief.

We can’t thank you all enough for the prayers sent up for Luke and his parents from all around the world. Thank you from the bottom of our hearts. We are thrilled that Luke is doing so well. Please continue to pray for us, as he still has a way to go. He is in some pain, he’s quite agitated when he’s awake, and he’s dealing with a narcotics addiction. My poor baby doesn’t understand why he has to hurt right now. When he looks at us with pain in his eyes like he’s begging us to make it better, it’s tough to handle. Again we thank you for the prayers that you continue to say for him and for us. We love you and pray that you are blessed as we have been blessed.

Rachael, David, and Luke

This picture is actually from a couple days before surgery, post-op pictures coming soon.